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Newly Diagnosed

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#1 rlm1988



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Posted 04 April 2016 - 05:47 PM

Last month I was diagnosed by a skin biopsy with Morphea. I was told it is a benign condition and is not life threatening. 


My dermatologist assured me I don't have to worry about any of the other things I've come across online while doing my own research. I'll admit, I'm terrified. I do deal with anxiety, specifically health anxiety, so this is really bothering me. 


The rash like lesions on my wrists that wouldn't go away after using lotion prompted me to seek advice from my doctor who then referred me to the dermatologist. After looking at pictures online, turns out that I have had this since I was a teenager. Somewhere around 16 but I only noticed it when I had a couple of dark spots on my abdomen. I just always thought it was scaring from a bruise.


I also have vitiligo which means I have 2 marks against me so far. 


2012 I began to develop indigestion but it went away after I stopped taking so much Excedrin for my headaches. 2014 it returned and then was diagnosed with GERD in 2015. I've been fighting that since. January I started to have edema in my ankles that comes and go so randomly. I'm also overweight so I'm assuming it's related to that. I have no other symptoms or issues. Sometimes I experience joint pain but I would say this is rare and only on days where I've been on my feet way too long. 


My dermatologist is great, I love her but after reading the things I have online, I don't feel like I have all the answers and assurance I need. I'm worried the symptoms above are a precursor for something more problematic so I'm wondering if I should seek advice elsewhere. I reside in Dallas, TX which is about 5+ hours from the Scleroderma center in Houston so that would be hard for me to do. 


The cosmetics of this skin issue doesn't bother me. I'm worried about my life and my future mobility. I feel alone in this whole matter and just need to know what is the next step I should take. 


Thank you and I'm happy to have found this place.

#2 doublehippy



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Posted 06 April 2016 - 04:45 AM

I would certainly consult with a Rheumatologist, who would order appropriate bloodwork and other testing.


Good luck,

Linda :wink:

#3 Joelf


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Posted 06 April 2016 - 08:04 AM

Hi Rlm1988,


Welcome to these forums!


I'm sorry to hear that you've been diagnosed with Morphea and I can understand how worrying the diagnosis can be. The most important thing to know about morphea scleroderma is that it is entirely different from systemic scleroderma — and it is never fatal.


Unfortunately, the internet is full of scary half truths and information which is not correct. We do recommend that our members consult a listed scleroderma expert, as although you may have a good relationship with your dermatologist, this complex disease requires specialist knowledge and expertise. There are only a few dozen scleroderma experts in the US, so it is normal to have to go out of state for one.


UVA1 phototherapy is now the recommended first-line treatment for morphea and I've included a link to our medical page on Morphea treatments, which I hope you'll find helpful and informative.


Now that you've found our forums and joined our community, please do keep posting and let us know how you are faring.


Kind regards,

Jo Frowde
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#4 Shelley Ensz

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Posted 09 April 2016 - 08:21 AM



Welcome to Sclero Forums. I'm sorry you have Morphea. Did you know it is common for people with morphea to experience one or two other symptoms, such as heartburn, without ever getting systemic sclerosis?  See Morphea Scleroderma, on our main site, for more info.


In fact, depending on the study, only 0 to 4% of people with morphea ever have an overlap with systemic. Many scleroderma experts have never had a patient who has had both.


We have Amanda Thorpe here, and she does happen to be one of the rare people to have both morphea and systemic. So, it's not entirely impossible, but also it is NOT ever inevitable, either, that morphea will "turn into" systemic. It's not like it is an automatic progression of some sort, since there is a 96% to 100% chance (depending on the study) that someone with morphea will not ever get systemic.


Morphea is very treatable now, especially with UVA1 phototherapy. Many people with morphea are treated by dermatologists. Please let us know how things go for you.



Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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